And What Followed...

Monday, July 31, 2006

Hi folks. I just want to tell you about my visit with Christine on Sunday afternoon. As always, it was wonderful seeing her, and we talked for about 30 minutes. She looked tired, but she also looked good, and she is very encouraged by how she feels a little more energetic as each day passes.

Christine is measuring her progress by way of the little things...things most of us would never even think about, but what for her are significant steps. For example: sitting in a chair. Christine said that a week ago she couldn't even sit in a chair. You know, it takes a certain measure of body strength to sit in a chair. But 99.9% of people are way past that point of their bodies being able to do it, so it never even crosses our minds. But there are a lot of muscles in our bodies -- like, say, in our backs -- that see to it that we can sit in a chair. And if those muscles are severely weakened or in pain...well, for some people simply sitting in a chair for more than a minute is as daunting a task as doing 50 straight push-ups is for others.

Christine told me that a week ago she could not sit in a chair. The first time she tried sheabsolutely could not do it. She then set out on a goal to be able to sit in a chair for as long as 5 minutes. She gradually built up to that, and she did it. On Sunday she told me that the last time she tried, she was able to sit in a chair for nearly 15 minutes.

Christine also used the example of drinking from a simple cup. (Think standard Styrofoam cup size.) Before it would take her several hours to drink an amount that any of us could literally down in four or five gulps without the cup even leaving our mouths. At this point, though, she is able to fully drink the contents of a cup in less than an hour.

Christine said she feels grateful because she knows that a lot of people who went through what she is going through were never again able to regain the strength to sit in a chair; or to drink a full cup of juice. But she has achieved those simple milestones. And they ARE milestones. And that gives her strength and hope.

Christine absolutely loves it when she is able to receive visitors. And she is tickled saffron when she talks about the impression her friends have left on the other folks there. Christine recounted several -- SEVERAL -- instances when a nurse walked in on her friends doing something...shall we say...out of the ordinary for your typical visitors at City of Hope. She gave me a nice little demonstration of the various facial expressions her nurses have made when walking in on Christine's friends being...well, Christine's friends.

But Christine absolutely loves it. And she thinks the nurses on her floor secretly love it too. Christine said they are so used to visitors to the other patients being serious and morose. Most visitors who come to see people at City of Hope exude a vibe of sadness. But Christine's friends come to City of Hope with a vibe of being alive and ENJOYING being alive. Christine said that everybody notices; and that THAT is a major source of her determination to fight on.

Oh, Christine and I came up with a simple little game, and Christine has asked all of you to contribute either when you come to visit or even here on this site: The Duo Game! At one point during my visit Christine noted how she now has someone else's cells flowing through her body, and she ended the thought by saying she and her donor are now "...like Simon and Garfunkle." And that's how it started. All of a sudden we started trying to name as many famous duos as we could.

Yeah, Christine and I both agree it doesn't make much sense. But for some reason we really got into it, and we spent a lot of time coming up with endings to the sentence, "My donor and I now go together like ______ and ________." Will Smith and DJ Jazzy Jeff. George Michael and Andrew Ridgeley. Abbott and Costello. Hall and Oates. Dean Martin and Jerry Lewis. Barnum and Bailey. For some reason, though, we couldn't name any famous duos that didn't make us feel...well, a bit dated. We just couldn't think of any from the last few years. And no, duos like "Brad Pitt and Angelina Jolie" don't count. The main rule is that both individuals had to have (have to had?) become famous AS a twosome. Anyway, we surmised that maybe peoplethese days are so into themselves that folks with talent (real or marketed as such) aren't as interested in sharing the glory and the spoils with someone else. But extra points to anyone who can name for Christine any famous duos of the late 90's or 2000's.

I was also able to get out of Christine a particular desire she harbors: a puppet show! It seems that glass partition separating Christine from her visitors provides a great set-up for a puppet show, and Christine has been wondering how such a thing would go over. Now, I was in Chinatown right before heading out to City of Hope, and I had gone by a friend's cult toy store to get a little something for Christine to add to the gallery of knick-knacks and playthings in her room. I wound up getting her an obscure little Luke Skywalker X-Wing fighter pilot figurine. So when I learned of her desire for a puppet show, I was ready to use it to act out a few choice scenes from "Star Wars" for her. But she was getting tired and it was time for me toconclude my visit, so unfortunately no show on Sunday. But in someone out there who will visit Christine this week is a puppet show that will make her smile. :-)

I went to go see Christine yesterday and am happy to report that she looked and sounded great. Traffic was light and City of Hope was pretty quiet; I highly recommend visiting on a Sunday.

We got to chat for about 45 minutes. I ran into her mother in the elevator on the way in and once I introduced myself as Christine's friend, she immediately gave me a huge hug. What a great mom!

I don't have much info on what exactly is happening white cell count-wise, but I do know that she's been noticing a big difference in the last few days. Her energy is up and she even briefly stepped outside her room one day. Yes, that's right, she actually left the bubble! Granted it was just an excruciatingly slow shuffle down the hallway but still. The funny thing was thatapparently it gave her motion sickness--she's that unused to moving around a space larger than her room.

Another change is that she's starting to have enough energy and focus to read. It still exhausts her to do simple things like sitting up, but she seems to be in a good place. She's got a long way to go, but when I'm with her it's hard to believe that she's sick.

She's full of more life and light than most of the people I know walking around. I know hospitals can be depressing and scary, but seeing Christine always makes me so happy. So go visit if you can! And bring snacks for the hardworking nurses who take care of her (I forgot to but won't forget again).

Sunday, July 30, 2006

I stopped by and visited Christine Friday on my way up to the mountains.

Her count had actually come down a little, but that is to be expected. She will continue to take 2 steps forward and 1 step back. Friday was day 22, and she wanted me to tell you that on day 30 the doctors will do a battery of tests to determine how things are really going. The results of which will determine when she will move to the Village.

Besides that she looked great. We had a great talk about skinny dipping in Lake Arrowhead. If it wasn't for the cold rainy weather up there this weekend I would have fulfilled her request to go skinny dipping in her honor. I think we can all take a little of Christine's spirit and live life to the fullest everyday.

Friday, July 28, 2006

I saw Christine yesterday and she seems to be doing well. She said that her tiny "four-wall" world is so removed from the real world that our visits help because she can vicariously experience the outside world through the energy and news we bring.

It was fine being on the phone separated by her window because we could see one another and talk without her being exposed to harmful germs.

She is amazing...she's been through so much and she continues to share her beautiful smile and hearty laughter! She said that it helps her to know that so many people are thinking about her.

In addition to loved ones, she said that there are even strangers that have sent cards and letters of encouragement. She told me about a letter from a teenager who heard her speak at a church service who is now a young advocate for marrow registration. She was cheered up by the little things I brought to add to her hospital room decor. There's a bulletin board in her room for displaying cards, letters, picures... We need to keep that board littered with stuff because it helps her to "feel the love".

On a medical note, Christine still needs platelets. I am fortunate to have been able to share some of my health with her by donating platelets at City of Hope. Call 626-245- HOPE (4673) to schedule an appointment.

I visited Christine last Tuesday 7/25 and I must say, she really did look great. Sure, she was kind of sleepy, but other than that she looked like she normally would if you woke her up early on a Sunday morning (I was there at 6pm, so no, I didn't actually wake her up). The window to her room is quite large, and very close to her bed so she doesn't feel that distant. But as other people have already said, she's only up for a 5-10 minute visit.

Christine said she received the DVDs people sent, but she still hasn't got the energy to actually stay awake long enough to watch for more than a few minutes before falling asleep.

The hospital is REALLY quiet. I didn't pass any other visitors in any of the halls. There were a few nurses scattered around the floor, but they were all just sitting around, chatting with each other. I've been to a slew of hospitals and I've never seen anything like it.

We just talked to Jocelyn (Christine's sister) and got some better news. The doctors are trying to keep people cautiously optimistic, but Christine's blood counts have started to show some activity. On day 18 her count was 400 and on day 21 her count was up to 2000. These numbers do need to be much higher (in the millions), but since the numbers were ZERO for more than 2 weeks, this activity is a REALLY good sign. Continued prayers and well wishes are certainly welcome!

If anybody has been to visit her in the past few days, please post an update! Mac is considering flying out this weekend to see her, so if anybody is around and wants to meet up with him, I'm sure he'd appreciate it.

Tuesday, July 25, 2006

Having had to put off a visit to see Christine for almost a month due to one sniffle or another, I finally made it in the late afternoon on Sunday.

Being in isolation is a real thrill. You come to know every inch of your cell, every noise and exactly what it is with time, and your internal clock knows when the I.V. bags will be changed and something new will be added.

The method of visiting was unique. It reminded me of an old Madonna video and an episode of NYPD Blue were the skell or pert was pumping quarters into the machine at the peep show. I dialed the number, the curtains parted, and Christine appears. For one who has been there,she looked great, was in good spirits, and gets exhausted by talking. I purposely didn't bring a great number of quarters.

We had a good chat about the annoyances that come with incarceration, the well intended things that make one want to scream, and the wait each day from the time of your early morning blood draw until they tell you your counts.

She was fully aware that she received male bone marrow and knows that the little marrows most probably are too proud to ask directions. But, she is confident, that necessity will trump ego and they will find their way to engraftment central. Being male, I absorbed her ratherblatant criticism considering her condition.

She was tired. That was clear. But, she had that smile. This was good.

I visited with Christine last night, and received a bit of positive news - her counts have risen very very slightly. As Christine says, this is nothing more but a small drop in the bucket, and since the movement upwards is so small, it is impossible to know whether this is a sign that the marrow is grafting. In addition, her counts are still very low overall, and so we all need to keep sending Christine our positive thoughts and prayers. Hopefully the combination of herincredible strength and our continued prayers will get her counts up and destroy this F-ing cancer for good.

Although Christine said she felt tired, she looked beautiful and strong (which is remarkable considering all she has been through), and we chatted through the glass for quite a while. As usual, she was curious about what was going on beyond the City of Hope walls, and we talked about the heat, fires, music, movies, etc, etc. We also talked about where we will go to eat when she is released (although she can't really eat much, she is craving buttered popcorn, thick steaks and fried bananas � what a combo!), what countries she will travel to, and how happy she will be when she can just hug someone once again. She told me that it is all of life's little pleasures - like feeling warm sunshine on her skin, holding hands, or indulging in a hot fudge sundae that she misses the most right now.

In all, it was wonderful to see her and we had a great visit. Please do keep sending her your prayers and healing thoughts, and for those who are able, do try to visit with her. Like others have said, having friends come by breaks up the monotony of her days.

Let us all hope and pray that the bit of good news I received will be the beginning of a positive trend, and that her counts will continue to rise.

Sunday, July 23, 2006

I know that I love hearing about people's visits with Christine, so I thought I would write about mine.

A few of us went to see her yesterday (day 17 of the transplant) and she looked beautiful and seemed to have more energy than I expected she would.

Her room was by far the most decorated out of all of them - butterflies everywhere. In fact, I didn't even see any decorations on any others. She said that her appetite is very limited and that she will sometimes have a few bites of applesauce and feel full. That night, her mom was going to make her noodles in a kitchen at the City of Hope and she figured that she would only be able to eat a few spoonfuls.

She told me that to get a "change of scenery" she slept with her head at the opposite end of the bed the night before! We didn't really get any updates on the progress of the grafting, but we did find out that it needs to happen by day 21, which made us hopeful because we were all under the impression that the window had passed already. I know it's only a few more days, but every second counts.

Like everyone has said, it's a great idea to call before you go. It seems like the best way is to dial the main City of Hope number and ask the operator for Christine Pechera's nurses station and talk to them. Also, I recommend having a dance routine prepared as Christine did request some of my signature Michael Jackson dance moves and I basically folded under the pressure.

Wednesday, July 19, 2006

My Husband Danny and I visited Christine last night. She was more tired than last time but still smiling. We sat on the desk in front of the window and pressed our faces against the glass and she had a good laugh so we kept going. Dan is particularly good at that. Christine loves her new volcano poster in her room. She says friends are sending all kinds of symbolic gifts that involve fire or dragons to inspire the fight.

I asked her directly about how the transplant is going and she said that the doctors have told her that her "Count", which I understand to be a bone marrow or cell count, as of yesterday, day 13, is still at 0. Which means that the transplanted marrow has not been grafting yet. The docs said it must graft in the next couple days in order for - as I understand it - the transplant to have worked. The time for prayer about her grafting is now. She told me she didn't want to think about it. So, I guess I am writing all this so less people will ask her as I did? I didn't know about liver concerns at the time so I don't know the status.

She did say it was okay to post these facts about her condition, though. She has not been looking at the site or her email because she is tired from the fighting. She wants her friends to know what is going on so they have a focus when they pray. She asked what I had posted before and seemed happy that I mentioned that people need to come visit her. She also wanted to say thank you again for the prayers and that she really believes this is why she is feeling much better than she could be - based on her last experience with this.

The best thing we can do right now is pray for the transplant to work and to visit her. She loves the pictures and posters. But, the best thing is just having people there to interact with, I think.

In a week or so, she moves into the village - which is the apartment like housing on the campus. She is looking forward to that. I'm not sure if at that point we can see her beyond the bubble or not.

I hope this message helps to answer some more questions about her progress. So great to visit with her! Just want her to come home now.

Sunday, July 16, 2006

My husband Danny and I went to visit Christine on Thursday night, July 13th. It's such a relief to see her. We have been sick and out of town most of the time she's been in and haven't had the chance til now to see her.

Through the fog she was her lovely, funny, laughing self. Though she is on a lot of drugs for the nausea, they seem to really be helping her. Her mom is well from the pneumonia so she was at the window when we arrived.

We have no update in terms of whether or not the marrow is grafting. I am guessing that it would have been mentioned if it had begun grafting. I didn't want to take any time away from any cheering up we could do. I think she is heading into day 11 now of waiting.

It's so hard to believe she is really enduring this. She is just a real human being fighting this for better or worse. All I can say is - please call City of Hope and go out and see her. If you have any good stories, talents for puppetry, all of this is great and really perfect to perform through the window. You will see when you get there.

Call City of Hope then when you get an operator just tell them you need to speak to Christine Pechera's nurse to find out if its a good time to visit. The nurse might connect you directly to Christine or to her Mom. I have not been told there was a bad time to yet when I have called, so let nothing but illness stand in your way. Anything to break up the monotony of her time in bed and the great discomfort and pain she is in - I am sure - is welcome.

She really enjoyed laughing, and making dark jokes about her absurd circumstances went over well. Dan joked about writing "Christine - Don't be such a pussy" on the poster-board outside her window and she laughed hysterically. No sugar coating for this girl. She is more than aware of her circumstances.

Tuesday, July 11, 2006

Just saw Christine today, and she looks pretty good for having going through hell. She looked tired, but still able to laugh. I was lucky, because today was a "good" day for her; "good" meaning her nausea was at a mild "car sickness" level. I can't imagine feeling like that constantly, 24 hours non stop.

Yough it was a good day, her body is full of medicine, and its making her liver not so good. So she asked me to ask all of you to say a prayer for her liver to heal and get better.

Sunday, July 9, 2006

I got in my visit with Christine and family on Saturday afternoon, July 8. I was totally jonesin' for some Christine time due to my last few weeks of bein out of the country. Updates just don't quite cut it from abroad, ya know?

Actually, the word "jonesin" was one of the first topics of my phone-through-glass conversation with Christine. The timing turned out pretty good since she woke up right when Igot there.

After mentioning how seeing one of her friends always makes her puddle up a little with tears, Christine joked about the high powered meds she's cravin. She said "Must be time for more morphine." I replied "Uh-oh!" She returned, "Oh no, morphine is goooood!" Laughter ensued.

So you can tell the stress and pain her body is going through. She was hunched up on her side, real sleepy and feeling pretty poorly, describing it as, "it's like the stomach flu meets your worst morning hangover ever." Although I could have gone into sympathetic detail about my worst hangover ever, I thought it would be best to let that one slide, for the sanctity of all stomach linings in the near vicinity.

Well, dear Christine and I had a real good talk for a while, mainly about our usual stuff, like boys. :) I told her about my vacation, and she was very interested to hear that Paris boys made the top of the list in attractiveness, rather than London boys. She spoke with a Pepe Le Pew accent about "ah oui, zee french" and "zier way wiss zee love."

Yes travel was a big topic and kept the spirits up for both of us. I told her now that I am back in California, I am so bored, so she has to get better and go out with me. Her comment, "Trust me, I don't want to be in here. I'd so rather go out." So I guess, visiting Christine is kind of like visiting an innocent friend in prison. You want to find a way to slip her an iron file in a bag of platelets or something, but the security is pretty tight. She said her favorite phrase right now is "antiseptic wipes."

As things drew to a sleepy fade out, we said bye-byes on the phone and her dad came back to the window to draw the curtains again. It almost seemed a little Amterdam red- light district risquee, like my euros had run out so I'd have to insert more money if I wanted the curtains to open up again. Haha! I'm just sayin....

Well Dad came back outside of the room and we talked for a bit about speed boats. As wewalked out of City of Hope, we ran into her brother Marc, carrying a big bag of neat relaxo stuff for Christine from the Sharper Image. Outside was Mom, waiting by the car. I had to rushover and get my Mom hug. She said she can't go into the room right now cause she's had a cold, so she talks with Christine on the window phone like I did. I know that must be real tough for her, but she said she's glad Marc and Dad are around this week to be with Christine in the room, and she'll be better and back in there with her soon.

So put in your prayers for the marrow to graft, cause this is an awesome family. I know Ilove them all. Like others have said before, always put in a call to the hospital and theirroom before you go for a visit, to see how Christine is feeling. It's really helpful to thefamily and keeps the emotional weariness for Christine at reasonable levels.

Through these phone calls, I actually delayed my visit a day, and I'm glad. For they all said the day before had been real tough on her, but it was great to see her more cheerful and talkingon Saturday.

Its Sunday morning and Christine is doing her best to relax at the moment. She has whatshe calls a "nausea headache" and so we placed a cool, wet towel on her head. I also gother an acoustic-therapy machine that plays sounds to enhance Alpha, Delta and Theta waves which seems to help.

For the past couple days Chrsitine has had a high fever. It is expected that she will spike every so often. Yesterday it went up to 39.2! (thats 102.2 degrees farenheit). The result was a number of blood draws in order to culture it to check for infection. Christine dealt with the high fever all night which not only exacerbated her nausea and aches but also leads to extreme full-body chills which she had to ride out.

Today she is doing better, her fever is now down to 37.3 (99.2 degrees F) which is good but she is expected to spike again. Her appetite is a little better.. by the way... if anyone knows of an ice-tea, berry-mixes or fruit punches that is packed in individual servings, has real sugar and not corn syrup and has been pasturized, let us know. Though she eats and can tolerate very little she is getting nutrition by IV as a supplement.

The frustration of not being able to tolerate food has gotten to Christine in a (and she'll admit) a kinda funny way. For instance she said that the food on fast-food commercials look appetizing to her now (which is something she would never say).. and apparently she had a dream last night about eating a steak at some place called Flemings, only to be woken up by a phlebotomist for a blood draw.

Oh she also got platlets yesterday.. she wanted to thank whoever is trace ID #67526 and gave unit LC59725. If anyone else wants to donate platelets or give their 0 postitive blood just come down to City of Hope! You can call ahead to see if yer eligible.. no-no's are recent infections, recent piercings, travel outside the US... yadda yadda yadda... you can call to find out more.

Aside from the fever Christine is having her bouts of nasuea, pain, exhaustion and restlessness. Basically she has good moments where she can talk and sit up but they can quickly go straight to a sudden fit of pain, nausea or simply being upset.

Overall she is fighting hard and doing her best to stay in good spirits.

... Christine was crying just now... she cries every now and then simply from exhaustion She said "its either I'm nauseated or knocked out on drugs" and questions which is better. She also said "I still don't want to believe I'm here". I reminded her this was temporary; a time of restraint, restlessness and healing in her cocoon while she transforms to who she is meant to be.

oh and Christine and I just want to thank everyone for the emails and quotes. I read all the emails that was sent to me as well as the wonderful quotes of people who had Christine in their hearts, it made her laugh, smile and she was very grateful. Please keep them coming... it really helps her :-)

Thats it for now on day 4.. She will be getting another chemo treatment in a couple days. I myself am flying out this Tuesday night back to NYC so I won't be able to type for Christine... but she may report off to me on the phone I'm not sure. Thank you all for reading, we Love you and hope you all enjoy this Sunday.

Friday, July 7, 2006

hey everyone.... This is Marc, Christine's brother. In case no one is aware, Christine wanted to let people know I'm an RN. At the moment I am at Christines bedside. I flew in yesterday (Thursday, July 7th) to be with her for this highly critical week. Christine asked me to write what is going on with her and what I have observed.

The strain of the transfusion has been exhausting physically, mentally and spiritually. Christine has been stating that she experiences exhaustion, pain, nausea, and restlessness simultaneously and constantly. Concentrating on keeping herself level is tiring and frustrating. She tries her best to relax or sleep but is often disrupted by the pain and/or nausea.

Needless to say she barely has the energy to speak and has limited capacity to interact. Overall she needs rest and that is why she has asked me to type for her. If anyone has left her a message, please be aware that Christine will not be able to get back to you anytime soon and she apologizes.

Also visitors can no longer enter the room and can only talk to her through a phone outside. Most importantly there are only small windows in the day in which she is able to have the energy to see and interact with visitors. She misses you all and always looks foward to seeing her friends but during these tough few weeks she will be unable to see many people. What we ask is to please call first before you come to visit, just to make sure Christine will have the energy she needs to see and speak with her guests. Additionally if you have any current infections or an infection in the past couple months, it is best if you refrain from visiting to protect her and other patients from a cross-infection.

As you know we are in the third day of the transfusion. At this moment the marrow has not grafted with her body. Bone marrow, if it accepts the body, takes a few weeks to graft. The longer it takes the marrow to start grafting, the harder it becomes for the patient as it becomes more challenging for the body to heal. It's for this reason that I am asking everyone to continue with their prayers, hopes and keep sending Christine positive love and support.

Though it may seem tough now, this hardship is merely a passing and temporary session of difficulty but for Christine however it feels like an eternity. So once again we must pray this these hard times flow through quick so she can begin her healing process.

We all thank you for your Love and prayers....

Marc Pechera

"The most beautiful stones have been tossed by the wind and washed by the waters and polished to brilliance by life's strongest storms."

For those of us who have been through transplants rose colored glasses seem to come with the tranplant procedure in a little invisible bag with parent, sister, husband or wife written on it. These folks that are dear to us want to wish and pray to have us come back to life as we have always been.

I remember my wife telling me how great things were going all of the time and how things were moving along wonderfully. I did not eat for almost 20 days. I lost my sense of taste and smell. My salivary glands were gone. I hurt like hell with one infusion after another.

The bathroom was miles away. Even twisting the handle was a chore. When I was given an infusion of a drug to stop nausea, it no sooner hit the tube before I was sick. I went through every drug they had up to opium to try to stop things.

Noise hurt. Light hurt. My skin hurt.

Yet those around me found everything to be fine. It is okay. It helped them to experience something never seen before in the most hopeful way they could.

I had difficulty with the priest who visited when he told me that what I was going through was God's will and part of his special plan. I asked him not to return until he had a better rationale for things. I guess it was God's will that I asked him to leave.

Those who have been through this stuff would be somewhat skeptical of Ms. Butterfly being up and gingerly walking around her room. She is pumped full of prophlyctic medications to ward off every thing imaginable, preparation drugs to ward off allergic reactions to whatever the next dose will be, pain killers that maybe approach dulling the pain in her joints, hands, shoulders, hips, back, and every other area that can hurt.

Butterfly is so very bright that you know that she is tormented by the constant presense of the questions "what's next?" and "what if" ?

Butterfly has given to all a gift of her courage.

We can only empathize with the feelings of her mom, her father, sister and brother. We have no idea what Christine is going through. We can only pray that she emerge from the other side fulfilling her mother's and all of our hopes for her.

God's hand is guiding her through all of this. She is special in his eyes having bestowed upon her so many gifts that she has so willingly shared with so many.

I know that for many of us she is the light at the end of the tunnel, a person to listen to and learn from, a person to watch so we also can experience her zest and amazement.

I just got off the phone with Christine's Mom. Christine has barely enough strength to shuffle to the bathroom door only 5 feet from her bed. I guess that's her Mom's interpretation of "walking around the room". I know that Christine has been in alot of pain and getting morphine. Her Dad says she is very weak, in bed most of the day and terminally exhausted. But she is fighting hard.

Christine has been dealing with the heavy side- effects of medications she has been given. Rigors, nausea, cramping and a whole assortment of unpleasant things. But her Dad says that she still is capable of making the nurses smile in her own sun-shiny way.

Her blood counts are at absolute zero. Only medical personell and family members are allowed in the room. This is because we can bring fungus in the room through our clothes and shoes. Bacteria and germs ride on our skin. If you give Christine any gifts, be sure to wipe it down with germicidical wipes before bringing it into her bubble. The nurses also say to limit vists to 20 minutes as Christine's limited energy is quickly depleted.

Christine was sleeping when I called, knocked out on some drug that starts with a V. But her Dad assured me that she is getting all messages.

Wednesday, July 5, 2006

I hope this message finds you in great spirit and courage. Today will be the making of your NEW life, and as we discussed, it will be the first step in a long journey of healing. So today, I congratulate you and the many family and friends who have supported you in getting here.

Everyone at the Matchpia.org team are truly inspired by all you have done to help bring tremendous awareness to this cause (of lack of minority representation in the NMDP Registry). It has been our honor and pleasure in representing you and the efforts of your family to the Senior Management Team and Board Members of the National Marrow Donor Program (NMDP).

As with many of the special patients in our campaign with the NMDP, we will pray for you on your new day of Birth, and continue to ask all those we know to do the same.

Christine, we would like to share this song (by Andre Bocelli ), with you, especially today, and let you know we are all so proud of your persistence and strength to LIVE.

With Love,Tim, Pia and the Matchpia.org Team

"It Only Takes One Match To Save a Life"

www.matchpia.org

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"The Prayer"

I pray you'll be our eyes, and watch us where we go.And help us to be wise in times when we don't knowLet this be our prayer, when we lose our wayLead us to the place, guide us with your graceTo a place where we'll be safe

The light you haveI pray we'll find your lightwill be in the heartand hold it in our hearts.to remember us thatWhen stars go out each night,you are eternal starNella mia preghieraLet this be our prayerquanta fede c'ewhen shadows fill our day

How much faith there'sLet this be our prayerin my prayerwhen shadows fill our dayLead us to a place, guide us with your graceGive us faith so we'll be safe

We dream a world without violencea world of justice and faith.Everyone gives the hand to his neighboursSymbol of peace, of fraternityLa forza che ci daWe ask that life be kinde il desiderio cheand watch us from aboveognuno trovi amorWe hope each soul will findintorno e dentro seanother soul to love

The force his gives usWe ask that life be kindis wish thatand watch us from aboveeveryone finds loveWe hope each soul will findaround and insideanother soul to loveLet this be our prayerLet this be our prayer, just like every child

Need to find a place, guide us with your graceGive us faith so we'll be safeNeed to find a place, guide us with your graceGive us faith so we'll be safe

Tuesday, July 4, 2006

I visited Christine tonight near the end of visiting hours. I had the sniffles, so I opted to talk to her via phone thru the big glass window to her room. She lay in the bed and we talked for well over an hour. She was a little bummed because she so loves the Fourth of July, and always tries to do something special on the day, like camping or last year’s fireworks in New York. And no, her friends didn’t shoot off fireworks in the parking lot tonight, probably for the best ;)

We talked about all sorts of things, from Bali to her learning guitar to her love of scavenger hunts (warning: there’s a scavenger hunt in your future once Christine’s 100 days are up). She stole my “this feels like visiting hours at prison” gag when she said that with my shaved head, she felt like she was visiting *me* in prison. I found out that when her dad heard that I had shaved my head for her, he went out and shaved his head.

We joked about the machines that fed the tubes that led into her body, and how the stack of machines and tubes and their Hulk-green lights looked like a Christmas tree. (I was saddened to learn that Christine wasn’t saving any morphine to take home for her friends.)

I told her of the power of positive thinking: Jim’s friend Steve, who was diagnosed with an inoperable brain tumor and given six weeks to live the same week he found out his wife was pregnant. Steve decided that nothing was going to stop him from seeing his child being born, and focused on that goal. With no treatment, his tumor went into complete remission. It’s four years later and Steve, wife and child are all doing just fine.

It was getting late when I signed off so she could get to sleep. I was signing her big Get Well card when I heard her yell “Den! Fireworks!” From across the dark room I could see her pointing out her window: she had the perfect seat to see numerous fireworks shows exploding their beauty across the night sky. Christine grabbed her video camera and settled into her chair to enjoy the shows.

It was the perfect close to a long day for her, and I thought of her on the drive home on the westbound 210 freeway thru the cities of Duarte, Monrovia, and Pasadena as they were lit up by huge firework blossoms.

the night before the transplant i am sending love out in all directions from my bed.

from my window tonight, I could see the entire horizon ablaze with fireworks. Somejust a few blocks from the hospital and a great sea of hundreds of sparks and colors miles and miles and miles into the distance. It was the most spectacular July 4th I've ever seen because I was able to watch dozens of big fire shows simulatneously along with tons of backyard parties!

Watching the shooting stars and colorful explosions, I just felt... just knew... that everything was going to be okay. Yes, I'm a little scared and a little anxious, but I'm just filling myself with love and gratitude and faith to make it through the next 24 hours.

So, sending sparks and fireworks to everyone from my heart to yours. I will be praying all night tonight. Praying that a year from now we will be watching fireworks together. And that 50 years from now we'll still be craning our necks to the sky to shout out "oooh" and "aaah".

Monday, July 3, 2006

Christine had asked me to write on her behalf. She has been on heavy doses of chemotherapy agents and narcotics to try to calm the pain. Her mind has been weaving in and out of consciousness and, during the times when she is conscious, feels as if a heavy fog has settled deeply into the crevices of her brain. She is very happy to hear from and see friends no matter how short the visit might be. She says that it feels good to stay connected and be with everyone, no matter how short the visit may be

She would like to extend hugs to all of those who were able to visit her at City of Hope as well as friends and supporters who called or sent pretty pictures. For those who asked, yes, she received packages. Many thanks to friends like Maxine, Richard and Kurt, and Jon C, as well as family like Donna and Mac, your thoughtfulness brought smiles and laughter.

I got to spend a little time with Christine today. It was great to see her. She is currently taking large doses of anti-rejection drugs, which, strangely enough, somehow comes from rabbits, so Christine refers to it as "bunny serum"!

She's counting down to the 5th and is of course scared of what this will be like, but nevertheless she expresses this apprehension with a strength I've never seen before and that is truly awe-inspiring. She told me how wonderful it's been to see everyone who's stopped by to visit, and about one friend who endured three missed attempts to find a vein during platelet donations (and still wants to donate again!).

Her room is covered with pictures of friends, a beautiful photograph of a tree, and while I was there a package arrived containing a large yellow butterfly, which has now been hung above her bed (not a real butterfly, of course!). She also told me one of her friends wanted to set off a fireworks show out her window in the parking lot of City of Hope! Wouldn't that be cool if it weren't so illegal?!

Saturday, July 1, 2006

Today I got the big dose of Melphalan chemo and tolerated it surprisingly well. The nurses keep asking, "Are you SURE you're not nauseated?" Carlos, Jackie and friend kept me entertained by playing Q-Bert, Bubble Bobble and Pac- Man on the tricked out custom made videogame system Tinoy and Jocelyn set up for me this afternoon.

Gregg, Leslie and Stephanie also visited after donating platelets today. Gregg said they met two women in the waiting room. As the conversation came around, the two ladies revealed that they were donating for a patient they didn't even know, but whose story moved them so much that they decided to help by giving blood/platelets. As it were, they were there to help yours truly. I was simply flabbergasted when I heard this and humbled as well. I wanted to cry and run down and hug them! Thank you everyone for taking the time out of your life to pray/support and BLEED for me. It really really means SO much and reflects what caring, authentic and beautiful souls you all are! I am so excited that blood of my friends will literally be running through my veins! You will actually be KEEPING ME ALIVE. Now THAT's wild stuff.

Tonight at midnight we start the Tacrolimus and Sirolimus infusion. Both of these are heavy "anti-rejection" drugs. Let's please pray that they do their job and that the transplant goes smoothly.

Tomorrow (Sunday) and Monday I will be infused with ATG. This concoction is more anti-rejection stuff. Even if ATG is extracted from harmless bunny rabbits, it is VERY serious. Patients usually get feverish, flu-like chills and bad allergic reactions. I'm allergic to fuzzybunnies and have told this to my doctor and nurses over and over again but they have assured me that because of the unpredictability of how each patient will react, I will have "one-on-one" care tomorrow. One nurse will be by my side the entire time. Comforting, yet a bit disquieting that it will be necessary.

July 4th is my favorite holiday over all holidays. Yes, even better than Christmas or Halloween. It is because on that day we celebrate the blessings of our lives, and we do it by gathering together in humungous groups to share food and shout out "oooh!" and "aaah!" as we watch the sky explode with fire and stars. Fireworks have always brought out the wonder and the gleeful joy of the child in me. I've never missed July 4th. This year, even though I am in my little bubble, my window overlooks a wide swath of the valley and I hope to catch little sprays of light in the sky in the distance. I hope you are all celebrating your freedom, not just the freedom we have in this country, but the freedom you have right now to do most anything you want. That is a blessing. Happy July 4th Weekend.

Here is a bit of good news: The partial donor has NO Allergies. So once I make it through this, I won't be allergic to bunnies anymore and can cuddle all I want!